well her last round of steroids don't seem to be taking.......so she and my wife are currently in the emergency room waiting for a bed so they can shoot her full of steroids via IV (I'm at home with our youngest daughter). she'll be there for minimum 3 days. she's 7 years old. she was diagnosed 6 months ago. and they are already talking about biologics and surgery.
good god.
Hey,
Sorry to hear she isnt doing better.. But steroids will help. The side effects arent pleasant, but she will get better. Looking into these aggresive treatments are necessary and you should be thankful that you are trying to get her help. I sat on my disease and wasnt aggressive enough.. Good luck and keep us updated.
2003: 7/14 NJ ... 2006: 6/1 NJ, 6/3 NJ ... 2007: 8/5 IL ... 2008: 6/24 NY, 6/25 NY, 8/7 EV NJ ... 2009: 10/27 PA, 10/28 PA, 10/30 PA, 10/31 PA 2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD 2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
Hey,
Sorry to hear she isnt doing better.. But steroids will help. The side effects arent pleasant, but she will get better. Looking into these aggresive treatments are necessary and you should be thankful that you are trying to get her help. I sat on my disease and wasnt aggressive enough.. Good luck and keep us updated.
Hey,
Sorry to hear she isnt doing better.. But steroids will help. The side effects arent pleasant, but she will get better. Looking into these aggresive treatments are necessary and you should be thankful that you are trying to get her help. I sat on my disease and wasnt aggressive enough.. Good luck and keep us updated.
did you change your diet?
I have learned what to avoid and what doesn;t give me any problems. I have never tried one of the crazy (I call them crazy) diets, like SCD or whatever. I find that to be happy I need to not be worried about what Im eating all the time. And sometimes it's worth the negative effect to have whatever you are craving.
2003: 7/14 NJ ... 2006: 6/1 NJ, 6/3 NJ ... 2007: 8/5 IL ... 2008: 6/24 NY, 6/25 NY, 8/7 EV NJ ... 2009: 10/27 PA, 10/28 PA, 10/30 PA, 10/31 PA 2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD 2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
well her last round of steroids don't seem to be taking.......so she and my wife are currently in the emergency room waiting for a bed so they can shoot her full of steroids via IV (I'm at home with our youngest daughter). she'll be there for minimum 3 days. she's 7 years old. she was diagnosed 6 months ago. and they are already talking about biologics and surgery.
good god.
I hope whatever procedure is used will help your daughter, and help you all have a plan. It sounds like a tough situation.
When I was in ICU after open heart surgery when I was 6 I woke up and the room was full of strangers, and I couldn't talk because I had a tracheotomy. I looked to my left and my mom was staring straight at me as if no one else existed. At that time those strangers were removed from my mind. It was just me and my mom. It was the "unconditional love" look that I will never forget. Oddly enough, one of the best moments of my life. Kids, they are like love sponges.
There is no such thing as leftover pizza. There is now pizza and later pizza. - anonymous The risk I took was calculated, but man, am I bad at math - The Mincing Mockingbird
well she seems to think that being in the hospital was like being on vacation. they had a flat screen tv, a PS3, the food was great, a massive playroom, and even their own tv station that was broadcast from down the hall, and she won a bunch of prizes from different games she played. she wrote in her journal that she got for her birthday all of the things she did in the hospital, and asked her teacher if she could read it to the class, and she did.
the first page just said "my time in the hospital" with a self portrait of her lying in the bed with a big smile and her arms straight up in the air.
Gimli 1993
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
the first page just said "my time in the hospital" with a self portrait of her lying in the bed with a big smile and her arms straight up in the air.
Rock on, young one!
There is no such thing as leftover pizza. There is now pizza and later pizza. - anonymous The risk I took was calculated, but man, am I bad at math - The Mincing Mockingbird
the first page just said "my time in the hospital" with a self portrait of her lying in the bed with a big smile and her arms straight up in the air.
Rock on, young one!
I honestly almost cried with joy when I saw that picture. kids draw from nothing but their heart, there is no faking anything, so that told me she honestly had fun there and is still a happy, well adjusted kid. warmed my heart.
Gimli 1993
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
well she seems to think that being in the hospital was like being on vacation. they had a flat screen tv, a PS3, the food was great, a massive playroom, and even their own tv station that was broadcast from down the hall, and she won a bunch of prizes from different games she played. she wrote in her journal that she got for her birthday all of the things she did in the hospital, and asked her teacher if she could read it to the class, and she did.
the first page just said "my time in the hospital" with a self portrait of her lying in the bed with a big smile and her arms straight up in the air.
Thats awesome news!
2003: 7/14 NJ ... 2006: 6/1 NJ, 6/3 NJ ... 2007: 8/5 IL ... 2008: 6/24 NY, 6/25 NY, 8/7 EV NJ ... 2009: 10/27 PA, 10/28 PA, 10/30 PA, 10/31 PA 2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD 2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
hey. been a LONG time since my last update. Former Hugh here. my daughter is in the hospital again. she had a change in a few meds, but no big problems for a while.
she started biologics just before Christmas 2014 as her oral meds were no longer taking. it seemed to be working, but then right after her second infusion, her loose stools came back again. Last weekend she looked horrible and complained of constant tummy pain (never was that bad, only occasionally would hurt), so we called her GI team on Monday and they said to admit her. They found her in a flare and also with a urinary tract infection. Treated that, also did a rectal scope and her GI doc said after looking at the pictures he took, he was expecting there to be more ulcers and for it to look worse, so he's optimistic.
the nursers last time in the H were awesome. This time they are complete bitches. My wife and I have had to put at least one of them in their place. the good ones seem to be only working the night shift!
She is on predinose via IV for the next few days, then on to her 3rd biologic infusion that she was supposed to get a few days ago but couldn't becuase of her fever. she is finally back to her normal self, but man, those nurses sure did a number on her and us. one in particular is going to be hearing from their supervisor.
if this infusion doesn't work, then her GI doc says surgery is the only option left. In some ways I'm hoping for surgery. Even though no one wants surgery, I just want this over with for her sake. If she was able to have an internal pouch, then that would be even better. Missing all of her childhood shit for tests and hospital stays and infusions and illness is just shitty. I just have such a tough time seeing her cry all the time, lying listless in bed or on the couch. Just not being herself. it kills us. for the most part, she's a real trooper. but when she's sick, what can she do. everyone has a breaking point, and she's only 8.
she comes home in 4 or 5 days. we'll see how it goes.
and my sister has this as well, and she lives a completely normal life. But she also didn't get it until her mid 30's.
my sister found out a while back she doesn't actually have UC, she has crohn's. apparently they are sometimes tough to differentiate between when diagnosing. But my wife's sister's husband had UC, and he eventually had the surgery and the reversal, and he is "cured" and lives life normally now. Hopefully if it comes to that, that is an option for her as well.
Flight Risk out NOW!
www.headstonesband.com
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hedonist
standing on the edge of forever Posts: 24,524
Again and as always, good thoughts to her and your family.
So young to handle so much in both pain and procedures that would frighten my adult ass. Sorry about the nurses too - I hope they didn't put any attitude on your daughter.
Again and as always, good thoughts to her and your family.
So young to handle so much in both pain and procedures that would frighten my adult ass. Sorry about the nurses too - I hope they didn't put any attitude on your daughter.
the main shit nurse was just abrupt and not nice to any of us. when she would reconnect her IV, she just forced it in as hard as possible, causing pain to my daughter to the point of tears. past times nurses have been very gentle and eased it in to minimize pain. and my daughter needed an enema before the scope. didn't even give me time to comfort my daughter before she just fucking rammed it in her ass, and my daughter screamed. it was brutal. she's just a shit nurse. which we have also gathered is common knowledge (based on comments from other nurses).
then one today wanted to administer some medication. I told her that she wasn't taking that type. THEN she reads her chart and realizes she has the wrong shit. it's your JOB as a nurse to read the chart BEFORE giving any drugs to a patient. Just elementary bullshit.
I'm really sorry to hear, former Hugh. I hope the shift change brings a gentler crew. Definitely have a talk with the hospital administrator, especially about the medicine. They almost did that to my mom in the hospital - she's allergic to penicillin & they almost gave it to her anyway, despite the big red wristband.
Hope your daughter retains her strength for this battle.
I'm really sorry to hear, former Hugh. I hope the shift change brings a gentler crew. Definitely have a talk with the hospital administrator, especially about the medicine. They almost did that to my mom in the hospital - she's allergic to penicillin & they almost gave it to her anyway, despite the big red wristband.
Hope your daughter retains her strength for this battle.
yeah, one of the good nurses strongly recommended I talk to the higher ups about the shitty nurse. I know as well any anyone that if a bad one doesn't get complained about, nothing will change. so I will be reporting her for sure.
thanks. she's feeling better right now. she will be out of the hospital in a couple days, and is on day passes during the days. she has a couple friends over right now.
Glad to hear that things are at least moving along, and everyone's eyes are fixed on the prize... excluding the idiotic nurses, that is. Man, stories like that really piss me off!
I didn't know you were HFD.... i thought you were just a new guy who fit in easily! :P
With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be careful. Strive to be happy. ~ Desiderata
Glad to hear that things are at least moving along, and everyone's eyes are fixed on the prize... excluding the idiotic nurses, that is. Man, stories like that really piss me off!
I didn't know you were HFD.... i thought you were just a new guy who fit in easily! :P
my daughter is out on another day pass today. My wife and my daughter get back to the hospital. They go to the fridge......most of her food is stolen. Someone, another patient, or more likely, another patient's shitty fucking parent, went in there (there is a code you need to punch in to enter-only given to patients), saw my daughter's goodies, CLEARLY LABELLED AS HERS, and stole it. Who the FUCK steals food from a sick child???
Flight Risk out NOW!
www.headstonesband.com
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hedonist
standing on the edge of forever Posts: 24,524
Who does that? Assholes, and people who just don't get it.
But you do. YOU do.
Breathe deeply on behalf of your girl, and yourself, and your wife.
Who does that? Assholes, and people who just don't get it.
But you do. YOU do.
Breathe deeply on behalf of your girl, and yourself, and your wife.
All that other shit? Blips.
yeah, really. it is just a blip. just something you don't need on top of everything else. especially when it's your child, they don't understand why someone would do that to them. it makes them sad. but I packed her a lunch bag with some replacements and such, so it's all good. it just sucked because they took all the applesauce (and it's a certain flavour) that is the only way she will take her meds. so luckily we had more at home to deliver to her this morning. otherwise I would have been even angrier than I was.
HFD - so sorry for you and your daughter to go thru this.
I had a cancer with a similar surgery to the one you want to avoid.....but, even if it comes to that, your daughter can handle it....the world isn't always fair but you gotta do what you gotta do.
hang tough!
If I had known then what I know now...
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
HFD - so sorry for you and your daughter to go thru this.
I had a cancer with a similar surgery to the one you want to avoid.....but, even if it comes to that, your daughter can handle it....the world isn't always fair but you gotta do what you gotta do.
hang tough!
as I keep saying to myself and others.....at least it's not a fatal disease. there's always worse. ALWAYS.
home from the hospital after 8 horrible days. this morning we had to force feed her her medicine like you would a fucking dog.
I'm done.
you're not done....you're her dad.
hang in there!!!!
If I had known then what I know now...
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
It's understandable. Hope there's a sense of relief for you and her being back at home.
this past weekend was probably the worst in the history of our family. tantrums and refusing medication and yelling and crying. being in the hospital was a breeze compared to this right now.
"this too shall pass.......this too shall pass........."
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
Comments
Hey,
Sorry to hear she isnt doing better.. But steroids will help. The side effects arent pleasant, but she will get better. Looking into these aggresive treatments are necessary and you should be thankful that you are trying to get her help. I sat on my disease and wasnt aggressive enough.. Good luck and keep us updated.
2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD
2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
did you change your diet?
I have learned what to avoid and what doesn;t give me any problems. I have never tried one of the crazy (I call them crazy) diets, like SCD or whatever. I find that to be happy I need to not be worried about what Im eating all the time. And sometimes it's worth the negative effect to have whatever you are craving.
2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD
2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
When I was in ICU after open heart surgery when I was 6 I woke up and the room was full of strangers, and I couldn't talk because I had a tracheotomy. I looked to my left and my mom was staring straight at me as if no one else existed. At that time those strangers were removed from my mind. It was just me and my mom. It was the "unconditional love" look that I will never forget. Oddly enough, one of the best moments of my life. Kids, they are like love sponges.
The risk I took was calculated, but man, am I bad at math - The Mincing Mockingbird
the first page just said "my time in the hospital" with a self portrait of her lying in the bed with a big smile and her arms straight up in the air.
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
The risk I took was calculated, but man, am I bad at math - The Mincing Mockingbird
I honestly almost cried with joy when I saw that picture. kids draw from nothing but their heart, there is no faking anything, so that told me she honestly had fun there and is still a happy, well adjusted kid. warmed my heart.
Fargo 2003
Winnipeg 2005
Winnipeg 2011
St. Paul 2014
Thats awesome news!
2010: 5/20 NY, 5/21 NY ... 2011: 6/21 EV NY, 9/3 WI, 9/4 WI ... 2012: 9/2 PA, 9/22 GA ... 2013: 10/18 NY, 10/19 NY, 10/21 PA, 10/22 PA, 10/27 MD
2015: 9/23 NY, 9/26 NY ... 2016: 4/28 PA, 4/29 PA, 5/1 NY, 5/2 NY, 6/11 TN, 8/7 MA, 11/4 TOTD PA, 11/5 TOTD PA ... 2018: 8/10 WA ---- http://imgur.com/a/nk0s7
she started biologics just before Christmas 2014 as her oral meds were no longer taking. it seemed to be working, but then right after her second infusion, her loose stools came back again. Last weekend she looked horrible and complained of constant tummy pain (never was that bad, only occasionally would hurt), so we called her GI team on Monday and they said to admit her. They found her in a flare and also with a urinary tract infection. Treated that, also did a rectal scope and her GI doc said after looking at the pictures he took, he was expecting there to be more ulcers and for it to look worse, so he's optimistic.
the nursers last time in the H were awesome. This time they are complete bitches. My wife and I have had to put at least one of them in their place. the good ones seem to be only working the night shift!
She is on predinose via IV for the next few days, then on to her 3rd biologic infusion that she was supposed to get a few days ago but couldn't becuase of her fever. she is finally back to her normal self, but man, those nurses sure did a number on her and us. one in particular is going to be hearing from their supervisor.
if this infusion doesn't work, then her GI doc says surgery is the only option left. In some ways I'm hoping for surgery. Even though no one wants surgery, I just want this over with for her sake. If she was able to have an internal pouch, then that would be even better. Missing all of her childhood shit for tests and hospital stays and infusions and illness is just shitty. I just have such a tough time seeing her cry all the time, lying listless in bed or on the couch. Just not being herself. it kills us. for the most part, she's a real trooper. but when she's sick, what can she do. everyone has a breaking point, and she's only 8.
she comes home in 4 or 5 days. we'll see how it goes.
www.headstonesband.com
my sister found out a while back she doesn't actually have UC, she has crohn's. apparently they are sometimes tough to differentiate between when diagnosing. But my wife's sister's husband had UC, and he eventually had the surgery and the reversal, and he is "cured" and lives life normally now. Hopefully if it comes to that, that is an option for her as well.
www.headstonesband.com
So young to handle so much in both pain and procedures that would frighten my adult ass. Sorry about the nurses too - I hope they didn't put any attitude on your daughter.
the main shit nurse was just abrupt and not nice to any of us. when she would reconnect her IV, she just forced it in as hard as possible, causing pain to my daughter to the point of tears. past times nurses have been very gentle and eased it in to minimize pain. and my daughter needed an enema before the scope. didn't even give me time to comfort my daughter before she just fucking rammed it in her ass, and my daughter screamed. it was brutal. she's just a shit nurse. which we have also gathered is common knowledge (based on comments from other nurses).
then one today wanted to administer some medication. I told her that she wasn't taking that type. THEN she reads her chart and realizes she has the wrong shit. it's your JOB as a nurse to read the chart BEFORE giving any drugs to a patient. Just elementary bullshit.
thanks for the kind words, hedonist.
www.headstonesband.com
Sending well wishes and hopes that she soon will be cured and strong again.
Hope your daughter retains her strength for this battle.
LIVEFOOTSTEPS.ORG/USER/?USR=435
yeah, one of the good nurses strongly recommended I talk to the higher ups about the shitty nurse. I know as well any anyone that if a bad one doesn't get complained about, nothing will change. so I will be reporting her for sure.
thanks. she's feeling better right now. she will be out of the hospital in a couple days, and is on day passes during the days. she has a couple friends over right now.
www.headstonesband.com
I didn't know you were HFD.... i thought you were just a new guy who fit in easily! :P
LOL
www.headstonesband.com
www.headstonesband.com
But you do. YOU do.
Breathe deeply on behalf of your girl, and yourself, and your wife.
All that other shit? Blips.
yeah, really. it is just a blip. just something you don't need on top of everything else. especially when it's your child, they don't understand why someone would do that to them. it makes them sad. but I packed her a lunch bag with some replacements and such, so it's all good. it just sucked because they took all the applesauce (and it's a certain flavour) that is the only way she will take her meds. so luckily we had more at home to deliver to her this morning. otherwise I would have been even angrier than I was.
www.headstonesband.com
I had a cancer with a similar surgery to the one you want to avoid.....but, even if it comes to that, your daughter can handle it....the world isn't always fair but you gotta do what you gotta do.
hang tough!
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
as I keep saying to myself and others.....at least it's not a fatal disease. there's always worse. ALWAYS.
www.headstonesband.com
I'm done.
www.headstonesband.com
you're not done....you're her dad.
hang in there!!!!
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14
www.headstonesband.com
www.headstonesband.com
"this too shall pass.......this too shall pass........."
www.headstonesband.com
Vegas 93, Vegas 98, Vegas 00 (10 year show), Vegas 03, Vegas 06
VIC 07
EV LA1 08
Seattle1 09, Seattle2 09, Salt Lake 09, LA4 09
Columbus 10
EV LA 11
Vancouver 11
Missoula 12
Portland 13, Spokane 13
St. Paul 14, Denver 14